cblack

Hi All,

I have been gluten free now going on 6 months and am doing quite well. Most, if not all of my symptoms and issues have disappeared on the gluten free diet. During the 6 month gluten free period, I have gotten "glutened" by mistake a couple of times, usually by eating out in a restaurant and getting cross contaminated. I've noticed that the longer I am gluten free, the more severe reaction I get if I do get glutened, and the longer recovery time. I usually know within 30 minutes that I've ingested gluten, immediate bloating, then quite rapidly progresses to severe stomach pain and cramping, severe nausea, and sometimes diarrhea. The pain is usually so intense that I quite literally curl into a ball. This will last for about 3-4 hours before easing and then I just feel lethargic and "tender" for about a week.

My question is this: Is there anything I can take during one of these episodes to ease the symptoms, just ease it enough that I can tolerate it and not feel like I'm going to die? Any over the counter medication that you know of or have experience with helping? We're getting ready to go on vacation and I'm a little nervous that I will get "glutened" while away. Any help is appreciated.

Hi all! I've been gluten free for 4 months and doing extremely well on the diet. My husband and I love to eat out, but I'm not sure about sushi. Can you tell me if it is safe to eat sushi?? I know the imitation crab has wheat in it, so I would need to avoid that and also bring my own gluten free soy sauce, but other than that, what do I need to know? Is the sticky rice safe? Are there other ingredients I need to look out for? Thanks!

Please, if anyone can help me to understand these test results:

Molecular Analysis of DQA1 Genotype:

0501 (HLA-DQ2) Gluten Sensitivity Positive: Yes

Molecular Analysis of DQB1 Genotype:

0201 (HLA-DQ2) Gluten Sensitivity Positive: Yes

0202 (HLA-DQ2) Gluten Sensitivity Positive: Yes

If you could just explain in simple enough terms that this "right brained" person could understand! Thanks!!

Please, if anyone can help me to understand these test results from genetic testing on my son:

Molecular Analysis of DQA1 Genotype:

0501 (HLA-DQ2) Gluten Sensitivity Positive: Yes

Molecular Analysis of DQB1 Genotype:

0201 (HLA-DQ2) Gluten Sensitivity Positive: Yes

0202 (HLA-DQ2) Gluten Sensitivity Positive: Yes

Genetic Analysis of your HLA-DQ genes reveals that you have three positive gene alleles for gene gluten sensitivity.

We had genetic testing done on him because I was diagnosed with celiac disease three months ago after 13 years of numerous gastro problesm. He doesn't have very many gastro issues other than being lactose intolerant. He does however have issues with gaining weight (very thin but eats like a horse!), brain fog, diagnosed as a child with ADD, canker sores, and fatigue. Based off the genetic testing, would it be prudent to go ahead and find a doctor to do the celiac blood testing panel? Thank you in advance for any help understanding the above genetic numbers! This board has been a blessing!

I would love to hear some opinions as to what are the best genetic test kits on the market for testing for the celiac/gluten genes? Which ones are the most extensive? Thank you!

Hi ya'll!

I will be vacationing for a week in July in the Destin/Ft. Walton/Miramar Beach area. Our condo has a kitchen in it thank God but we will be eating out on the beach & boardwalk alot. If you know of any safe suggestions please let me know! Otherwise I am going to be eating nothing but steamed crab legs & mussels!

Thank you!

Jess

Jess,

Jim N Nicks and Marlin Grill! Owner is good friend of mine.....wonderful food! Many gluten free choices! I was diagnosed 1 month ago and Tom (the owner) is very knowledgable about "gluten free".

Cindy

Is there a blood test that tests for gluten intolerance? Thanks!

Sorry to say you did not get the full pannel. Your doctor needs to order a total IgA to see if you are deficient. If you are, then the standard IgA tests are invalid. Here are the tests he needs to order: total IgA, IgA tTg, antigliadin IgA/IgG, EMA and if IgA deficient, IgG tTg. Hope this helps! I had to request the doctor specifically write out each test separatly, because the first time (on both of my boys) they wrote a "celiac panel" (which to him he wanted all of the above), but the lab would not recognize the celiac panel and defaulted to the total IgA and the IgA tTg. So my one boy has been stuck twice. Also I did not know when I got tested that I needed all of those. I only initially had the IgA tTg and luckily (or I probably would still be undiagnosed) it was overwhelmingly positive. Don't be afraid to ask for the rest of them.

Thank you for replying Roda! I emailed my doctor's office earlier today requesting why only the one test was run. This is the reply tha I received:

"If Tissue Transglutaminase Ab, IgA is negative, the Endomysial Ab, IgA Titer by IFA is not performed."

Why does this have to be so difficult?!?

I just got a copy of my bloodwork back from my doctor and here are the results:

Tissue Transglutaminase Ab, IgA 3

Reference 0-19

This is all that was done. I thought there was a little more extensive testing done than this?? Maybe I am wrong. He says I'm not celiac and basically brushed me off. The only other "oddities" in the bloodwork was a Vitamin D deficiency, MCH & MCV were slightly elevated, and RBC was slightly low. Can someone tell me if this is all that is done in a celiac panel? This board has been a life saver! Thanks!

Does anyone know of a good doctor in the Orlando area that is familiar with celiac testing? I have just been diagnosed and my 29 y.o. son lives in the Orlando/Ocala area and needs to now be tested to see if he has it as well. Thank you!

I hope someone on this forum can help me. I just got the results back from small bowel biopsy and blood work yesterday. GI reports that both were negative and he doesn't believe I have celiac. I'm beyond frustrated at this point. For 13 years, I have had a dull ache in left side of stomach, intermittent diarrhea/constipation, gas, bloating, chronic fatigue, tingling/numbness in hands and feet, and acid reflux. I have a history of canker sores and anemia. My immediate first degree relative history is Type I diabetes (sister), seizures (mother & brother), and mother died of stomach cancer. After numerous doctors and tests over the last 13 years, nothing has ever been diagnosed, other than depression and stress. I have been rx'd anti-depressants and sleeping pills more times than I can count. And treated like it's all in my head more times than I can count as well. I finally gave up and decided that I was just going to have to live with this not feeling well. Three months ago during routine blood work by my gynecologist, my liver enzyme panel came back elevated. In researching possible causes, I came across celiac disease and as the saying goes, "the light bulb came on". I felt like I had finally found the cause for all my vague symptoms. Finding a doctor to test for it became a lesson in futility. I took the Prometheus test and tested positive for the DQ2 and DQ8 genes. I also did the Enterolab test and tested positive for IgA. A week ago, after much frustration, I finally found a GI that did the endoscopy and blood work based off of those tests. Yesterday, he told me that I was not celiac, that yes, I do have the genes, but "so does 30-40% of the population" and that "doesn't mean anything". He didn't have an explanation as to why I am having these symptoms, just said that I definitely don't have celiac disease. As far as the Enterolab test, he says fecal testing just isn't done, and he's not comfortable with it. He did say that I was deficient in Vitamin D and should start a supplement. He ended the conversation with, "thank you and it was nice meeting you". Immediately after the endoscopy, I went gluten free and do feel better. The bloating, gas, and acid reflux is diminishing. The dull stomach ache is still there intermittently, but seems to be improving. My stools still aren't what I would call normal, but better than they were. But I've only been gluten free for 5 days. I apologize for the length of this message, I'm just still feeling so confused and really thought I had found the answer. Can someone explain the difference between celiac disease and gluten intolerant? Am I gluten intolerant? Is it one in the same? I just don't know what to think!

I'm having endoscopy and biopsy day after tomorrow and I'm a little nervous. Anyone that has already had this done that can offer some positive reinforcement? I would really appreciate it!

We have not had ANY luck with doctors in Mobile for our two young daughters. We have had to travel to Birmingham to have anyone take us seriously. Our 5yr old was vomiting at almost every meal, crying from stomach pain, stuggling with constipation one day and diarrhea the next; the baby refused to nurse from about 2 weeks old, cried all the time, had explosive diarrhea, and fell off the growth charts. We went to 3 different pediatric GIs in Mobile and Pensacola; everyone of them told us there was no problem.

I finally talked with a local GI (who, unfortunately, does not treat pediatric cases) who told me I really needed to take them to UAB. While we are still struggling for a "medical diagnosis" we've at least found a GI in Birmingham who is working with us to control their symptoms. The GI in Mobile that pointed me in the right direction was Dr. Benjamin Siegel. I taught his son last year, and always felt very welcome to call him with any questions. He's actually the one that suggested I look into celiac.

Hope you can find some help soon.

Thank you for your post. I think I'm just going to head to B'ham, I have been given a couple of doc's names there (Shallcross and Halama) that are supposed to be very educated in celiac disease. Good luck to you with your children, I hope you find the solutions you need.

Can anyone tell me if elevated cholesterol is a byproduct of celiac disease? I have never had high cholesterol, but in doing routine bloodwork, my cholesterol and liver enzymes are high. Follow up bloodwork showed cholesterol even higher than before, but liver enzymes back to normal. I have not been diagnosed with celiac disease yet, however, I have been doing a lot of research and think that I may well have it after years of digestive problems that don't go away. I am currently still eating a gluten diet until I get diagnosis, but was curious if high cholesterol has been connected to celiac disease.

I recently moved to the Mobile, AL area and I'm in deseprate need of a doctor that is open minded and educated enough to test for celiac disease. I've had typical celiac symptoms over the last 12 years and have been diagnosed with IBS, depression, stress, possible food allergy, it's all in your head, etc., etc. Recent routine lab results showed that my liver enzymes are elevated for some reason, and in doing research of possible causes, celiac disease was listed. Upon researching celiac disease, I felt like the articles had been written about me! I am convinced that this may be the culprit of so many of my vague digestive problems over that last 12 years. But, I can't seem to find a doc in the area that takes me seriously. I came home very frustrated yesterday after seeing a gastroenterologist that within 10 minutes of meeting me told me that I did not have celiac disease because I didn't fit the profile. He was very rude and condescending and would not agree to run a celiac panel that I had requested. Please, if there are any celiacs in the Mobile, AL area, please let me know who you are seeing for a physician. Thanks!